2. Finding the Language
Finding ways to talk straightforwardly about mental health in long-term conditions within the limitations of brief consultations can be challenging, and not having the words can be a barrier.
Finding the language with Dr Warner
Dr Warner discusses when such conversations might take place, how to set the scene, and various simple ways of talking to patients.
(Want to skip ahead? Full transcript and timings available below video)
00:06 So when should I have these conversations? At the point of diagnosis?
At the point of diagnosis, normalising the fact that this news might take time to settle in, providing relevant information, linking with IAPT for signposting info on local support groups, and checking whether a link with the relevant specialist team is established will all be useful. But this consultation can also be a chance to ensure an offer is made for a further appointment.
Certainly ensure that a follow-up appointment is offered, whether it is taken up or not, with a clinician at the surgery in the coming weeks, allowing for a period in which the patient might have digested the news further
00:47 What about further down the line, what signs should I look out for?
Further down the line, you might also start to detect signs that a conversation about how a patient is coping could be useful. Some of the clues that something is up, we might not automatically link to their emotional or psychological health. So, if there are missed appointments or difficulties with medication adherence, repeated requests for more checks or tests, perhaps
Your own feelings can be a guide as well. So, for some reason, you are feeling that you’re not doing enough for this patient, or perhaps starting to feel excessively guilty or that you’d like to offer more time. You might be feeling especially frustrated and you might actually dread appointments and want to offer less
That’s all useful clinical information and it might be that you are picking up on the need for further support
01:44 How might I set the scene for a conversation about mental health?
In terms of setting the scene, firstly considering: pro-actively reaching out to the patient rather than fire-fighting. Have a look at the letter template document for a way to do this. That is so that mental health doesn’t become a “door handle conversation” - the last the thing the patient says, which they wished they could have started with, in a way that leaves you and them worried or even frustrated
02:15 What about time limitations?
It might be you could make use of an existing long-term condition review where there is more time. Or you might consider booking a longer consultation for those with long-term complex conditions – which is actually something all CCGs are commissioning their practices to do
Expect to be covering mental health in your meeting – it might feel odd the first few times, but you might find your own way of checking in that feels right to you. You may feel comfortable with some emotion coming into that consultation room. When this occurs, it is often a great relief for the patient, though it might not feel that way, but to know that you are ok to go there with them can be very helpful in itself
But, for many reasons, this might not be possible. The following prompts offer ways to half-open a door while also pointing out other resources that go beyond what you might be able to provide for there and then. The message you can aim to convey is that you are listening, that you are aware of the limits of that particular consultation, and that you have in mind further support that might help them
You may well do this already, and it may feel quite basic, but finding a comfortable way of putting things can be incredibly help, and not having the words can be quite a barrier
03:37 How do I do it? Some examples…
· How have you been coping?
· Is something keeping you up at night?
· It would be normal to struggle at times.
· What support do you have around you?
03:57 Wondering about existing support…
· Who do you have to talk to?
· Who is around for you at the moment?
· Do you think they might be interested in coming along to your next consultation to think together?
04:10 Acknowledging the lack of time in your consultations…
· I worry we never have time to cover everything. I want to ensure you have enough time to speak about what matters do you. Do you feel that might be the case often?…
04:30 Tentatively testing a hypothesis you have about the patient’s way of coping…
· You seem like someone who likes to power through, to get it done. Is there any point in your week or anyone with whom you can slow down or share some of this?
04:48 Acknowledging that uncertainty can be difficult...
· None of us really like to talk about times we feel like we aren’t sure what to do. These sessions are really brief - are you interested in thinking or talking more about your condition?
05:04 Work from the idea of goals and values…
Or work from the idea of goals and values. Patients have commented on how pleasantly taken aback they have been to be asked this question about what matters to them
· “Is there something, a goal, you’d like to work towards or an activity you’ve stopped that used to matter? Going out more… A structured, weekly therapy might help with this”, you might say
05:36 Or from the idea of changes in routines…
So, saying something like:
· I think something gets in the way or makes these new routines hard for you…would that be fair to say…It might be worth thinking more about this….
· Would you like some support in thinking about living alongside your condition?
05:56 Not making a big deal of it… the PHQ2 and the GAD2
Finally, you have already on your EMIS system the prompts about the PHQ 2 and GAD 2 screening questions. Maybe working from these and doing them routinely with each patient so that it’s not made a big deal of, it might be easier
06:15 Patients’ potential responses and the next steps…
Often this will bring up questions from the patient:
· I’ve got a long-term condition. Why are they talking about mental health?
· What services are they talking about? Who are those people? What’s their training? What will be expected of me? What are the waiting times?
To answer those questions, have a look at the videos from the relevant psychological services and the patient videos.
Some of those anxieties may also be driven by stigma. So also have a look at the accompanying videos on the links between body and mind and stigma in different patient groupsAnd, for lots of other ways to have symptom-specific conversations or to explain the link between the body and mind, also have a look at the accompanying links and documents on the website
Reaching different patient groups, with Senait Eyob
For all kinds of reasons services are better at meeting the needs of some patient groups than others. Senait, founder of the Ethiopian Women’s Empowerment Group, discusses some of the potential barriers to healthcare for the women she has worked with, and about her own experience of finding a way to talk about her long-term condition.
(Want to skip ahead? Full transcript and timings available below video)
00:18 Can you say a bit about yourself?
My name is Senait. I’m from Ethiopia. I’m the managing director of the Ethiopian Women’s department group. I work with women from Ethiopia, Eritrea, Morocco, Bangladesh, Pakistani, Egyptians, people from different walks of life
00:41 How did the Ethiopian Women’s Empowerment Group come about?
I have been treated with long-term illness. I have been treated for breast cancer. At that time, I was really passing through hard time. So, I was really looking for people from my country because I came here by myself and it was really difficult for me to find friends. My friends, few of my friends, my Ethiopian friends and myself, started with the idea of a coffee morning, and it was developing and we established an organisation
01:19 Of course, making broad generalisations isn’t helpful, but what have been some of the challenges for the women you have worked with and for the clinicians they might see?
It’s very difficult for the GPs and nurses, because the patient has come from very different background which is where long-term illness is considered as a curse or long-term is, you know… considered as, someone for example, who is mentally illness is considered crazy. So, for the nurses or for the doctors, it’s really difficult. Yeah, there is a fear. Most of our women, they don’t want to go for a screening because they are scared of if they hear bad news. The other thing is that as a migrant, we come from poverty, so we have got a lot of expectation from our family because we have to support each other as extended families. If you go, for example, to school you have to achieve, you have to be the first one in the class, that sort of thing. That mentality, when we grow up, even when we are migrating, we don’t want even to think about our health. All the time, achievement, achievement, achievement. So, when something happens in your life, like long-term illness or life-threatening disease, you don’t want to listen, you don’t want to hear, because that will be the problem for your work. You have responsibility, maybe if you are one maybe you are supporting twelve or thirteen people. So, you don’t want… you live in denial, even if you have a long-term condition you will say, “I will go tomorrow… I will see my GP another time”.
03:02 What do you think is helpful about coming together as a group and hearing from other people living with long-term conditions?
For example, I mean, some people they really break the stigma and they come for help. For example, when they come here, when they come to my office, I tell them about my experience. For example, I have lymphoedema on my right side. Means they asked me, I’m happy to explain to them that I have lymphoedema, this is a life-time condition but still I am working. I’m, you know, a real example for them. Still, I am a survivor, for 19, 18 years, to take their treatment and to lift up their emotional wellbeing. The coffee morning, it really helps to meet other people. So, they come even when we ask them to come for outing. They convince each other, no, no, no you have to look after yourself, we have to. So, coming together as a woman, it really makes them to be strong and to support each other. Because of the coffee morning and other activities, it really created a support network
04:12 Using professional interpreters
I’m not encouraging them to take their family members. For example, the family members don’t take it seriously or they don’t have the skills to interpret. The other thing is I don’t encourage them, for example, to take their children. The children will be any stress. So, there are professional interpreters and they have the right to ask at the GP surgery. If they need interpreters, they need interpreter. Especially when it comes to long-term illness because it is serious, they have got the right to ask interpreters at the front desk
04:45 Can you tell us your experience with illness and getting help?
I was in Ethiopia and my husband was the one who found that lump. He came to Ethiopia for the wedding. I didn’t recognise it at the wedding, you know, it was just like happiness and those sorts of things. I didn’t take it seriously. But after I came here, he insisted me to go and see the GP. We went three times, the final time I went to the hospital. They found the lump. I had a biopsy and I had an x-ray. They confirmed I had breast cancer. So, if it not because of my husband, I would be dead. I mean, it was already late. It was aggressive cancer, but because of God and because of the treatment, I have survived all these years.
A message to patients in Bengali, with Shahnaz Ahmed
Shahnaz has worked for many years as an interpreter in the NHS. She also works at the Bengali Workers Association in Camden – a great resource for the Bengali community. She has described feeling frustrated in her interpreting work when she has to sit and translate that her Bengali patients are “fine”, when she can clearly see that they are not. She has kindly recorded a message for patients in Bengali:
A message to patients in Turkish, with Ahmet Caglar
Ahmet works as a clinician at the Tavistock & Portman NHS FT and facilitates a therapeutic Horticultural Group in Hackney, which has been running successfully for many years and is attended by members of the Turkish community. He has kindly recorded a patient message in Turkish:
A message to patients in Amharic, with Senait Eyob
Senait has also kindly recorded a message in Amharic that you might wish to share with your Ethiopian patients (translation below). Please keep an eye on the website for a message in Turkish to follow.
(Want to skip ahead? Full transcript and timings available below video)
Amharic to English translation for Senait’s video
00.00 – 00.12
Hello, my name is Senait Eyob. I am Ethiopian and the director of Ethiopian Women’s Empowerment Group
00.13 – 00.22
Today I will be talking about long-term illnesses and how you can find support to help you manage them
00.23 – 00.33
I have personally been through breast cancer and was treated for it 17 years ago. Thanks to God, I have made a recovery
00.34 – 00.41
I am here to tell you that there are many people who can help you with long-term illness in this country
00.42 – 00.50
From my own experience, I understand that deciding to go and get a check-up can be quite frightening
00.50 – 01.01
But the symptoms of long-term illnesses, such as cancer, arthritis and high-blood pressure can have a huge impact on our lives and limit what we are able to do day-to-day in different ways
01.02 – 01.14
For example, chronically swollen knees can lead to mobility problems and stop you from being able to do housework and other activities. Some long-term illnesses make you feel tired all the time and stop you from being able to go outside
01.14 – 01.24
It is very important that you know where you can get support, especially since it is often difficult to find people who can help
01.24 – 01.34
Often, friends and family are too busy to give all the support we need and many people suffer with illness alone, especially when living in a foreign country.
01.35 – 01.43
It is important to know that your local GP can do a lot to provide you with solutions
01.44 – 01.53
For example, they can refer you to professional counsellors for psychological support
01.54 – 02.04
Counsellors are specially-trained and experienced in taking time to listen to peoples’ problems and offer advice.
02.03 – 02.12
Counselling sessions are confidential and translators are also available to help with any language difficulties
02.13 – 02.30
Having listened to your personal experiences, counsellors discuss with you how you can manage your long-term illness and lead a fulfilling life despite your diagnosis
02.31 – 02.47
The physical effects of long-term illness can be made worse by mental health effects, such as stress, depression and anxiety, so it is important to also seek support to address those problems and empower ourselves with coping methods
02.48 – 03.04
As well as psychological counselling, you can find many other services through your GP which are dedicated to empowering people in coping with long-term illness. Another example is peer-support groups
03.05 – 03.15
In these groups, you have the chance to meet other people with the same conditions and learn from each others’ experiences about different ways of coping
03.16 – 03.24
Hearing from other people who are living through the same illness and finding way to manage can give you so much hope and inspiration
03.25 – 03.33
When living away from your home country it can be difficult to find support because our main support systems, such as our mothers, fathers, brothers and sisters, are not nearby.
03.33 – 03.43
However, it is important to seek support and share the problems you are facing with illness with your doctors and nurses. They can do their best to help you find solutions that will personally suit you.
03.44 - end
I hope this video has been helpful, that it will encourage people seek support and remain hopeful. Thank you. Senait.
You can register your interest for the Supporting good mental health in your patients with long term conditions training events in your borough.
A range of useful existing resources, some of which are mentioned in the training videos.